As many of you know, we kicked off our first meeting of the Sydney Children’s Hospital Cystic Fibrosis Parents Advisory Council on the 4th of June 2014. The cystic fibrosis parents advisory council (or CFPAC for short) is comprised of a bunch of volunteer parents who are working in partnership with the Sydney Children’s CF medical team to improve outcomes for our children across a range of key areas.

The medical team at Sydney Children’s Hospital recognises that we as parents can play a crucial partnership role in supporting and improving the health outcomes for our kids. We are the ones who are keeping track of every sniffle; we’re monitoring food and nutrient intake, we’re listening to changes in breathing and we’re overseeing physio. We’re the ones who are thinking about our child every day and asking ourselves “What could we do better today?” or “What difference can I make?”.

If you’re interested in joining the Sydney Children’s CF PAC please drop us a line and say hello.